A ground-breaking guide on end of life care for people with bone marrow cancer myeloma has been produced by two leading charities.
Marie Curie and Myeloma UK collaborated on the information pack for patients, which provides practical advice and guidance on end of life care and is the first resource of its kind for this patient group.
“The pack is intended to be a resource that supplements medical or clinical advice”
Myeloma currently affects about 17,500 people in the UK. While research, new treatments and faster diagnosis mean survival rates have increased, there is no cure as yet.
The guidance was created in response to feedback from myeloma patients, according to Myeloma UK service development manager Sue Perkins. She said: “Our research has shown there is a need for better and more meaningful information for myeloma patients about the end of life.
“For many people death is a difficult subject to discuss or to think about and for some, learning about what may happen towards the end of life allows them to take back control in a situation that can often feel overwhelming,” she said.
“The pack is intended to be a resource that supplements medical or clinical advice. It draws on the experiences of a range of stakeholders, and we hope that it will provide a useful point of reference and support for healthcare professionals as well as patients,” she added.
The resource, which covers topics including what happens when treatment is no longer an option, was reviewed by an expert panel and people with the disease and their families.
“Marie Curie speaks to people affected by terminal illness every day, so we understand the impact that a terminal diagnosis can have on the individual and those around them,” said Stephanie Weber, the charity’s programme manager for information and support.
“We also know people often struggle to get the information they need to help them understand their options,” she said. “By working in partnership with Myeloma UK, Marie Curie hopes the new resource will enable more people with myeloma to plan ahead and make the most of the time they have left.”
Planning Ahead: An Infopack for Myeloma Patients is available to download from the Myeloma UK website.